Sometimes What You Are Most Afraid of Doing Is The Very Thing That Will Set You Free
Human beings are creatures of habit. We stick with what we know, even when it's hurting us, or even causing us tremendous amounts of pain. It's only when the pain that we experience finally far exceeds our fear of the unknown, that we cast ourselves off, and this is exactly what it looks and feels like to do.
I've been waiting for awhile to use this one, and today just seemed like an entirely appropriate day. Human beings are creatures of habit. We stick with what we know, even when it's hurting us, or even causing us tremendous amounts of pain. It's only when the pain that we experience finally far exceeds our fear of the unknown, that we cast ourselves off, and this is exactly what it looks and feels like to do.
I've had to completely reboot my life several times as a cancer survivor, because I needed to thrive, and couldn't bear the pain that I had been feeling inside anymore. I didn't know what was next, nor even where I might land, just that I needed to go in a new direction.
Yes, jumping off like this caused periods of tremendous uncertainty, but I eventually found my way, established new routines, new relationships, and new ways of living. My post-cancer inner world is calm today. I'm no longer living in fear or dealing with anxiety, nor am I suffering from post traumatic stress any longer. I'm truly at peace. This has been invaluable to me, and you can't put a price on peace of mind. Jumping off of a cliff might have looked crazy, foolish, and stupid to others, but I was doing what was right for me, and it's what set me free.
This isn't even really a #Brexit post, but you know it could have been.😉 I'm not judging it one way or the other, but it's the same human nature in play, just about something other than cancer. It takes courage, and I get it, and I admire it, and wish everyone the best of luck weather you're dealing with a major political decision, or a personal or health related one.
StevePake.com
Godspeed Jordan "Sunshine" Jones
When I started volunteering as a blogger for Kim Jone and the Testicular Cancer Awareness Foundatio back in 2014, I did so because I was inspired by the story of Jordan Jone, loved the energy of the Jones family, and their dedication to their mission of spreading awareness about testicular cancer. It just felt like the right place for me to be, and putting my energy into. Never in a million years did I dream or imagine that just a few short years later, we'd all be saying goodbye to Jordan like this.
When I started volunteering as a blogger for Kim Jones and the Testicular Cancer Awareness Foundation back in 2014, I did so because I was inspired by the story of Jordan Jones, loved the energy of the Jones family, and their dedication to their mission of spreading awareness about testicular cancer. It just felt like the right place for me to be, and putting my energy into. Never in a million years did I dream or imagine that just a few short years later, we'd all be saying goodbye to Jordan like this.
The story of Jordan Jones is the one that all of us, every single one of us cancer survivors and co-survivors, fears inside. It's the fear that we'll "beat cancer" and be back to our lives and living, and make it through all of our big two and five year milestones and be declared "cured", only for cancer to still rear its ugly head again many years later. Oncologists like to joke that the two most curable cancers are testicular cancer, and then recurrences of testicular cancer. It's of little comfort to any of us, and not even true in the case of late recurrences like these, which have a poor prognosis. Although late recurrences are rare, and tend to occur more often in those who had very advanced stage cancer initially such as Jordan's, the fact is, late recurrences can happen to anyone, regardless of the initial stage of our cancers. Jordan fought like hell, and some important discoveries were made along the way that will surely help the next guys down the road. All of Jordan's fighting and suffering over the past year wasn't for naught (Jordan's own words), but it still hurts beyond belief to be saying goodbye like this.
We don't have any control over the two big dates in our lives, just the dash in between. That second date may have now been etched in stone for Jordan, but Jordan didn't "lose" to cancer. "You beat cancer by how you live, why you live, and the manner in which you live. So LIVE!" says Stuart Scott. Jordan LIVED and "dashed" well. Merely Jordan's diseased body has died. His spirit and his energy lives on, is free of all of the tremendous suffering he experienced, and he will remain a hero for helping to bring awareness of testicular cancer to millions across the world, for inspiring so many of us, and for all of the lives he touched with his amazing energy.
The inspiration I gained from Jordan and the Jones family, and making the most of the time you have, is a significant part of my own story now in learning how to overcome all of my post-cancer fears. We all would have liked to see Jordan's dash last so much longer, but my God did he dash. That brings me comfort personally, knowing that he lived so well. Thanks for all of the love and energy that you brought into the world, and for having inspired so many of us. We will all miss you dearly, but your memories and energy will be kept alive for ages to come.
You've done well, Sunshine.☀️♏️
Please keep Jordan's mother, Kim Jones, his father, Jeff, and his loving sister, Breanna Jones, in your prayers as they face the loss of such an incredible soul in their lives.
RIP Jordan "Sunshine" Jones, June 8th, 2016, 4:33pm.
StevePake.com
National Cancer Survivors Day 2016 - The Rush to Evolve After Cancer
As I look back on 5 years of cancer survivorship, I've started to see from a higher level just how much I've evolved every year since cancer. We evolve constantly throughout our lives, perhaps too slowly to notice on a year-to-year basis, but we're always evolving. Having cancer as a young adult is a massive accelerator for that evolution.
5 Amazing Years since Cancer :)
National Cancer Survivors Day is a pretty big time for me, as this is the period of time each year where I can hopefully declare myself to be another year free from cancer. Back in 2011, I had just finished my 4 rounds of EP protocol chemotherapy at the end of May, and was getting post-chemotherapy CT scans right around this date. That scan didn't come back clear. I had a residual mass leftover, and chose to go through the RPLND surgery up at Memorial Sloan-Kettering Cancer Center in New York. I finally got my first official all clear on July 1, 2011, after all pathological findings from the lymph-node dissection surgery came back negative.
As I look back on 5 years of cancer survivorship, I've started to see from a higher level just how much I've evolved every year since cancer. We evolve constantly throughout our lives, perhaps too slowly to notice on a year-to-year basis, but we're always evolving. Having cancer as a young adult is a massive accelerator for that evolution. Not only are we challenged to evolve past the significant physical and mental challenges that cancer leaves in its wake, but I know so many of us feel this accelerated need and rush to evolve into the people we were meant to become, and to finally do the things that we were meant to do, when we realize that our lives might be on a short clock. There's a rush to find purpose and meaning in our lives, and a rush to experience life and the world around us. People tend to take notice of the drive and determination that we have, and this is where it comes from.
We're creatures of habit, though. We hold onto what we know, even when it hurts us. Not every element of our lives before cancer are going to fit in our post-cancer lives, so don't be afraid to take that first step in a new direction. Comfort zones are nice, but nothing ever grows there. The first step in evolving yourself after cancer, is to decide that you're going to evolve. You don't even have to know how, you just have to decide that you're going to. Jumping off of a cliff is about what that first step can feel like. I've made figurative leaps like these more than a few times now, and afterwards, every single time, I've always asked myself why I hadn't jumped sooner? Continually evolving myself after cancer has been my path towards a better and more fulfilling life.
The first step in evolving yourself after cancer, is to decide that you're going to evolve. You don't even have to know how, you just have to decide that you are. That's the first step.
I've made figurative leaps like these more than a few times now. Afterwards, and every single time, I've always asked myself why I hadn't jumped sooner?
"Some days, the best we can do is to simply survive,
and nothing else. Celebrate Life!"
How many days were there when the best I could do was sit in a corner in tears, because I was so afraid and hurting so badly inside? That's still called surviving, and is still worthy of celebration. It can be a long and difficult road from survival to thriving, but it was because of my strong desire to evolve, move past what life had thrown at me, and not being afraid to take that what became many "first steps," that I've gotten to where I am today. I'm not afraid of cancer anymore, I no longer live my life in fear while watching over my shoulder, and no longer suffer from posttraumatic stress, either! I've come a long ways since the days of sitting in that corner a lot.
"There is life after cancer – it is beautiful, it is meaningful, and it is something to celebrate." - National Cancer Survivors Day
I have a lot of bad memories through this time of year, so we've always tried to do something fun and memorable to help overwrite those dark times. This year, my rain-delayed annual summer kickoff color party that I normally hold on the weekend before Memorial Day, just happened to fall on the same weekend as NCSD. My wife and I have both been under a tremendous amount of stress lately due to an external situation in our lives, so it was a nice way to just forget everything else that's been going on for awhile, and have a great time. Don't be afraid of what happened yesterday, and try not to worry about what could happen tomorrow. Be present in life, and enjoy each day. The next day? Repeat. :-)
My annual summer kickoff color party, with some dear and beloved friends. Always such a great time, and so much fun! This party had nothing to do with cancer or NCSD, and everything to do with simply enjoying life. The best way to survive cancer, is to LIVE!
There is life after cancer, it is beautiful, it is meaningful, and it is something to celebrate. Simply celebrate that you're here if that's the best you can do, but don't be afraid to take those first steps towards evolving yourself after cancer, so that you can find your way out of that corner, and experience the joy and the beauty that life has to offer you.
Happy NCSD to all!
StevePake.com
Surviving Survivor's Guilt - Remembering Michael Atkins
Life goes on, and the sun will rise and set again for many of us after cancer, but not for all. Survivor's guilt is a very normal part of the cancer survivorship experience. It can be tremendously painful, but is also a huge opportunity for growth in our lives.
Life goes on, and the sun will rise and set again for many of us after cancer, but not for all. Survivor's guilt is a very normal part of the cancer survivorship experience. It can be tremendously painful, but is also a huge opportunity for growth in our lives.
I'll never forget the story of one of my cancer warrior brothers, Michael Atkins, whom I had met on a support group along with many others back in early 2011, when we were diagnosed with testicular cancer. Of all the people I had met during this time, I really identified with Michael, because he was a family man like me. I had two young children at home, but Michael and his wife, Kirsten, had four. I wanted to believe that all of us would survive and get through our cancer fights together, but I really needed Michael to survive, because Michael was me, and I was Michael.
There is no easy cancer, but my Stage 2 testicular cancer was relatively easy pickings. My fight was done and over with in five months, but Michael was diagnosed with Stage 3 pure choriocarcinoma, and had a long and tough fight in front of him. It's true that testicular cancer is considered to be the most curable cancer, but not the pure choriocarcinoma form of it, which is so aggressive that only about 1 in 10 survive this form of the disease.
Michael's fight was brutal. He went through primary and high-dose chemotherapies, the two very best chances for a cure, both of which failed to cure him. Then, there were numerous clinical trials that he went through over the next year and a half, while criss-crossing the country, and seeing the very best doctors possible. Many of these treatments gave a response, but only bought him time, and not a cure. Michael put on a strong front throughout, and there was always another plan or another option on the horizon, until he just couldn’t go on anymore.
After nearly two years of fighting, the news came in January of 2013 that their fight was winding down, and two months later on February 28th, 2013, the white flag was officially raised. Michael’s body had been battered by so much continuous chemotherapy and radiation over the past two years, that he no longer had the strength to make it to appointments; his body gave out before their options did. In-home hospice had to be started, at which point I fell to absolute pieces, because I could no longer hide from the fact that my friend was going to die.
From the time Michael entered hospice care on the 28th and through his passing on March 7th, 2013, I was overcome with grief and sadness unlike anything I’d ever experienced before. I cried everyday for hours, numerous times per day, and was simply inconsolable during this time. I couldn't sleep, I couldn't think, and I couldn't do anything besides mourn for my friend and his family. I prayed constantly for Michael to have a peaceful passing, for him to be free of pain, for his wife to find the strength that she needed, and for his four children to find peace and comfort through all of this.
It wasn't just the loss of a cancer warrior brother that had me huddled in a corner in tears - I also had terrible and gut-wrenching feelings of guilt, as though a knife were tearing through my soul. I mourned Michael's passing as though he really were a brother, but also felt terrible about the fact that I was getting to live and enjoy life with my family and my two children, but here was a guy with four children that wasn't going to make it. It didn't seem right. It didn't seem fair. I was Michael, and Michael was me. Why was I getting to live with my two children, yet he was being taken from his four?
Experiencing survivor's guilt is a very normal part of life as a cancer survivor. This wasn’t the first time that I had experienced it, but Michael’s passing was, by far, the most powerful case of it I’d experience in my years after cancer. Watching people that I had cared so much about die while their families watched helplessly, is what finally made this whole cancer thing real to me. It's okay to mourn, but don't forget to remind yourself that it's okay to live, as well. Your families and your friends all need you to. Live the best possible lives that you can, on behalf of those that couldn't. Honor them and keep their memories alive by doing things that you think would make them proud, and put smiles on their faces.
As it turns out, experiencing survivor's guilt is also a huge opportunity for growth. I definitely gained some new appreciation for my life immediately after my cancer fight, but that was merely a warm-up. Not being able to make any sense of the death of friends in the years after, is how I really came to appreciate my opportunity for life so much more. The beautiful woman by my side, the laughter of my children, the joy that friends had brought into my life, and all that the world had to offer all became so much more real and vivid to me, knowing that friends were no longer here to experience any of these joys of our physical world. Terrible survivor's guilt helped me to evolve as a person, and truly take nothing for granted anymore. It's out of the ashes of the deaths of friends like Michael, that I became so much more aware, and gained the full appreciation for life that I have today.
Special thanks to Michael's widow, Kirsten Ingebretsen, for allowing me to share a part of their story with the world.
StevePake.com
You Will Find What You Look For, So Look For Something Wonderful
A silver lining is a consolation prize, or something that's second best. Why settle, I told her? If you're going so far as to try to find a silver lining, why not just try to find a golden one? So long as your hearts and your minds are fully open, you'll find what you're looking for, so why not try to find something even better?
I was chatting with a friend of mine last year, who found herself caught up in a terrible life situation not relating to health, and was struggling to deal with it all and find meaning in it. She was trying to find a silver lining in her situation, but I've never liked that way of thinking. A silver lining is a consolation prize, or something that's second best. Why settle, I told her? If you're going so far as to try to find a silver lining, why not just try to find a golden one? So long as your hearts and your minds are fully open, you'll find what you're looking for, so why not try to find something even better?
As much hell and misery and turmoil that having cancer as a young adult has brought into my life, there are elements of it that have been absolutely stunningly beautiful, and humanity at its finest. I see the beauty just in life and living, and every single day. So much of it was there all along, but unnoticed. Nothing is taken for granted anymore, and I love and appreciate everything. If it took so much sorrow and suffering in my life to gain this ability, is that not a great gift, and a golden lining? I choose to see it as such. Happy Friday!
StevePake.com
Once You Learn How To Be Happy, You Won't Tolerate Being Around People Who Make You Feel Anything Less
Do you have any idea how hard I've had to work to find happiness through the chaos and turmoil that cancer had brought into my life? I'm not just "happy" in my life today by accident. I've had to work on it for years, working through layer upon layer of pain, and rooting out the demons within me at every level.
Do you have any idea how hard I've had to work to find happiness through the chaos and turmoil that cancer had brought into my life? I'm not just "happy" in my life today by accident. I've had to work on it for years, working through layer upon layer of pain, and rooting out the demons within me at every level. The self-doubt, the depression, the anxiety, the post traumatic stress, I had to work hard through all of it to get where I am today. Cancer as a disease of my body left me a long time ago, but it still persisted within me as a disease of my mind for many years after, haunting me, and constantly trying to bring me down. Mental health problems after cancer are so common, and such a burden to work through. Many people don't even know where to begin, and suffer for years.
I had just been chatting with a friend, trying to understand why I've had absolutely no desire to be even the least bit social with a particular circle of friends as of late. They're not bad people, and I don't dislike any of them. I just feel indifference, but indifference is less than happiness, and thus my complete lack of desire to engage at all. We feel like our lives are on a short clocks as cancer survivors. I need people in my life that I can have deep and meaningful bonds with, and/or just feel positive energy and good vibes from. I have no interest in anything less than that, and it's as simple as that! 👍 Literally it's not them, it's me. My bar is just so much higher than it ever used to be. #itsnotyouitsme
StevePake.com
If "Plan A" didn't work, keep your cool; the Alphabet has 25 more letters
Cancer is a whole new reality, a whole new set of life circumstances, and a whole new set of challenges to adjust to that requires growth, change, and evolution. Chances are, you're NOT going to get everything right the first time, and that's okay. Keep retooling and readjusting your life until you have the right people, the right approach, and the right philosophy for life that can take you to the next level.
Cancer is a whole new reality, a whole new set of life circumstances, and a whole new set of challenges to adjust to that requires growth, change, and evolution. Chances are, you're NOT going to get everything right the first time, and that's okay. Keep retooling and readjusting your life until you have the right people, the right approach, and the right philosophy for life that can take you to the next level.
From "Five Years Ago Today", still on the front page of my website, or go to StevePake.com > Archives > February 14th, 2016.
"I'm not the same person that I was five years ago. I’ve crashed and burned to the ground hard three times in these past five years, not just from the shock of a cancer diagnosis as a young adult, but from all of the struggles to evolve and grow into life after cancer. That’s three times since being diagnosed with cancer, that I've felt completely shattered and broken inside, and have had to give up so much of what I'd believed about life, and start over. One doesn't simply do an about face on decades of programming and expectations about life in an instant. It takes time measured in years to heal and evolve, to slowly let go of the old, and to finally grow into our post-cancer realities."
Plan A is long since gone for me, and I'm not even on Plan B, C, or D anymore. I think this is more like Plan E or F for me. If something isn't working out, let it go without apology, and keep adjusting and recalibrating your life until you feel whole and complete. You don't have to apologize to anybody for making changes in your life. The only person in this world walking in your shoes, and living your reality, is you.
StevePake.com
You Have The Right To Grow Without Apology
Cancer is an entirely new reality and set of life circumstances. There's absolutely nothing that says you have to keep being the same person that you always were.
Cancer is an entirely new reality and set of life circumstances. There's absolutely nothing that says you have to keep being the same person that you always were. Thriving after cancer means growth, change, and evolution. You have the right to grow as a person in order to overcome what you're facing in life, and you don't need to apologize to anybody for doing so.
I'm fast approaching five years cancer free, and I've continued to grow and evolve so much even in the past year. It's not cancer that's forced me to evolve so much, but the demons it left inside of me that did. I'm a completely different, and far better person today than I've ever been.
StevePake.com
Leave, Change, or Accept - All Else Is Madness
I've written volumes on my website about the struggles I've faced as a cancer survivor and all that's challenged me. I can neither leave this situation, nor have I ever been willing to accept some things about it. All I've ever been able to do is CHANGE, to grow, and to evolve.
I've written volumes on my website about the struggles I've faced as a cancer survivor and all that's challenged me. I can neither leave this situation, nor have I ever been willing to accept some things about it. All I've ever been able to do is CHANGE, to grow, and to evolve. I'm not the same person that I was before cancer, nor am I even the same person I was immediately after my cancer fight. As I look back on five years of cancer survivorship, I can see three major periods of time where I crashed and burned to the ground hard, but then experienced tremendous growth and evolution afterwards as I had finally let go of the old, and embraced the new. Change is hard, but it's been the only way forward for me.
StevePake.com
No Matter How Slow You Go, You Are Still Lapping Everybody On The Couch
This was me at the gym this morning! But you know what, I still feel awesome mentally and physically despite a crappy workout. Exercise has been my cure-all for the past few years.
This was me at the gym this morning! But you know what, I still feel awesome mentally and physically despite a crappy workout. Exercise has been my cure-all for the past few years. Anxiety? Go for a run. Depressed? Go for a run. Feel like crap physically? Go for a run, or even just a walk if it's all you can do. Every single time, I've always felt a ton better physically and mentally after getting a good workout in. You don't have to set any records, and you're not competing with anybody else. Run, walk, cycle, lift weights, or even beat the hell out of a punching bag. Doesn't matter. Just get up and get moving. That's all you have to do.
StevePake.com
The Highest Form of Ignorance Is When You Reject Something You Don't Know Anything About
I love every single comment I get about my writing, including the occasional backfires. I knew when writing "PTSD After Cancer Part III" that I would catch some flak from somewhere for mentioning faith and spiritual beliefs as a way of healing, and I was right.
I love every single comment I get about my writing, including the occasional backfires. I knew when writing "PTSD After Cancer Part III" that I would catch some flak from somewhere for mentioning faith and spiritual beliefs as a way of healing, and I was right. The funny thing is that I myself had rejected faith as a way of healing previously. I had been closed to it, and even politely declined a few friends who had invited me into their churches. I didn't need it. Religion, and especially organized religion, wasn't what I was looking for. I made a lot of progress on my own, but could never seem to heal completely, and I'd have done anything to end the pain that I continued to feel inside even years after cancer. I was just tired of continuing to hurt from this. It was completely reversing course on faith, and developing an independent set of spiritual beliefs and going all in on them, that finally managed to heal me completely.
I'm not saying that anyone is right or wrong. This is an independent journey, and we all have to find our own ways. The only thing I'm saying is to keep an open mind. See my last post about needing to completely rearrange our lives, and getting out of our comfort zones. Faith was something that hadn't been a part of my life before, but that needed to be after cancer, that I only realized after 4 years. I wish I had realized this before, as it could have spared me quite a bit of internal suffering. Finally allowing myself faith and something to believe in beyond our physical existence tamed my mind, and took the wind right out of the sails of all of my inner fears. I'm truly in awe of the power of our own beliefs. Had my mind still been closed, I'd likely still be afraid, and still hurting inside today. Instead my mind is free and at peace. Always keep an open mind. What you reject today, could end up being your cure tomorrow.
StevePake.com
Post-Cancer Fatigue and the Importance of Exercise
By far, the biggest physical challenge I've faced after cancer, is that of chronic fatigue. After months of being poisoned almost to death by harsh chemotherapy drugs, irradiated trying to nuke cancer cells out of existence, or having our bodies ripped apart and then sewn back together, our bodies are just plain tired.
By far, the biggest physical challenge I've faced after cancer, is that of chronic fatigue. After months of being poisoned almost to death by harsh chemotherapy drugs, irradiated trying to nuke cancer cells out of existence, or having our bodies ripped apart and then sewn back together, our bodies are just plain tired. They take a beating fighting cancer, there’s tremendous amounts of healing and rebuilding that needs to be done, and all of that requires a lot more rest. I went from being just fine on 6-7 hours of sleep per night before cancer, to needing at least 9-10 hours after. Anything less, and I would struggle badly throughout the day. My stamina also plummeted, and I had to very carefully balance the amount of physical activity in a given day, or else I'd simply run out of gas. This wasn’t an easy thing to manage while trying to live the best life that I could after cancer, while keeping up with my busy family of four!
A year or two after my cancer fight, and long after the pain from surgeries and various complications had finally subsided, I took notice of another type of fatigue. I realized that I had continuous low-grade aching and burning throughout my body that I never felt before cancer, and that it never really went away. Everybody thought I looked great, my hair and color had returned, and I had managed to lose a bit of the weight that I had picked up, but only I could feel this low-grade aching and burning in every single muscle in my body, and my continual struggle for energy despite the years that had passed. I never felt like I had anything more than a half tank of gas for the whole day, no matter how well rested I was. My body felt like it had aged at least 30 years, and I was formally diagnosed with chemotherapy-induced peripheral neuropathy by my GP. My oncologists told me that my neuropathy symptoms had improved to as good as they would get by this time, and that there was little hope for further improvement. I refused to accept that, and went to see my "other doctor."
My wife just happens to be a neurologist. She commonly sees older patients who might have had cancer a few times, some of whom have neuropathy problems so bad that they can't even stand or walk anymore. I was horrified. My wife encourages her patients to exercise, as that encourages nervous system regrowth and repair, but it’s a slow process that can take a long time. Few of her patients comply. I did.
For the next few years, I dedicated myself to a near daily program of exercise. I walked, or ran, or did whatever I could do on a given day. I gave up going out to lunch with my co-workers, as lunch was the only time I could truly exercise and push myself. It took everything that I had to get going in the mornings, and I was too exhausted from my day to exercise during the evenings. Progress, if you could call it that, was slow. It seemed like I was going nowhere, but I was happy for whatever incremental gains in strength and stamina that I could pickup. I'd wanted to give up so many times, but exercise always made me feel better, and there was no way in hell that I was going to spend the rest of my life feeling like an old man. I was a determined Scorpio on a mission.
Some tips. Our bodies have been through complete hell fighting cancer. Listen to what they’re telling you, and give them the rest that they need. Respect their limits, but keep pushing for more. Be patient, but persistent. Never give up, never lose hope, and find the support that you need, especially from other cancer survivors who know exactly what you're facing. Never underestimate the resiliency of our bodies to heal and recover. Our bodies are amazing, but need prodding and encouragement! Give that to them. Most of all, never stop believing in yourself.
I could never run more than a few blocks without having to go down to a walk, until one day I could. Then I could never run a full 5K in better than 30 minutes, until one day I was able to do it! Then, I couldn't do that consistently, until I could. I never could have imagined a time when I'd be able to exercise hard 5 days per week and feel fully charged each day, until today that I do! This progression has taken years, and not months as it might have for normal people, and might not have ever happened had I stopped believing in myself and quit!
April 1st, 2015 was the first time I was finally able to run a 5K in under 30 minutes, after over two years of pounding the pavement. I was so happy that I cried, as it represented the heavy chains of post-cancer fatigue coming undone, and physical freedom and energy that I hadn't had in years.
Five years after my cancer diagnosis and after so much hard work pounding the pavement and hitting the gym, I finally feel 30 years younger, and have all of the energy that I need again. I've been so happy at some of these milestones that I've cried, just being able to do something simple like jog behind my kids learning to ride their bikes, after a busy full day. I can see clearly now how my body has slowly but surely been coming back to me after all of these years. I couldn't be happier, finally having my rightful youthful energy back again, and having my confidence back knowing that I can do whatever I set my mind to. Never give up, and never stop believing in yourself. Cancer knocks all of us down, but keep getting back up.
All charged up from a workout at our local gym on a beautiful Sunday morning in the Spring of 2016, and ready for the day!
StevePake.com
If You Want To Grow, Get Outside Of Your Comfort Zone
All of these fit together. Especially as young adults, cancer turns our lives upside down. Not all of the elements of life as we knew it before cancer, "BC", are going to fit into our new post-cancer lives. In order to thrive again, that means making changes in our lives.
All of these fit together. Especially as young adults, cancer turns our lives upside down. Not all of the elements of life as we knew it before cancer, "BC", are going to fit into our new post-cancer lives. In order to thrive again, that means making changes in our lives. New friends, new routines, new approaches to life, new philosophies, and even new religions. Trying new things means going outside of your comfort zones by nature, and that's ok. You might have to let go of some of the old, to embrace the new. It's all a part of finding that "new normal". You don't have to know what you're looking for. Just keep an open mind and keep on looking, and maybe you'll find something far greater than you could have possibly imagined.
StevePake.com
Strength Doesn't Come From What You Can Do, It Comes From Overcoming The Things You Once Thought You Couldn't
Sunday inspiration. We're so much stronger than we believe we are. There's a popular expression of doubt, "I'll believe it when I see it." The late Wayne Dyer wrote a book titled the reverse of that, "You'll see it when you believe it" about the power of our minds to transform our lives.
Sunday inspiration. We're so much stronger than we believe we are. There's a popular expression of doubt, "I'll believe it when I see it." The late Wayne Dyer wrote a book titled the reverse of that, "You'll see it when you believe it" about the power of our minds to transform our lives. For years after cancer, I struggled physically, mentally, and spiritually, but never stopped believing in myself, and always found ways to heal and overcome no matter what I was facing. One of the most important lessons I've learned in 5 years of cancer survivorship are the powers of belief, and to never stop believing in yourself. You CAN do it. You just have to believe.
StevePake.com
People Will Never Truly Understand Something Until It Happens To Them
Some of my nearest and dearest friends, people who've been named or pictured in some of my blogs and have been along for this ride with me in various ways, have said that they can't possibly understand or even imagine what this has been like to go through.
Some of my nearest and dearest friends, people who've been named or pictured in some of my blogs and have been along for this ride with me in various ways, have said that they can't possibly understand or even imagine what this has been like to go through.
God bless them for that, but I try, and we all should. It's only through a broader understanding of the challenges we face, and what our lives are really like as cancer survivors, that care and support for all of us will improve. This is a good problem to have. A generation ago, so many of us wouldn't even be here today, but instead would have died "after a long illness". There were no cures back then. It's a blessing to be alive today, but they're not easy lives to live. So many of us have numerous and significant challenges that we face in our lives after cancer. Bear your hearts, share your stories, and help that broader understand of the plight of cancer survivors come to fruition. We can make it happen.
StevePake.com
What I Learned from Ron Bye, a 40 Year Testicular Cancer Survivor
That time I just happened to bump into 40-year testicular cancer survivor, Ron Bye, in Singapore. :)
There's a concept called synchronicity that describes "meaningful coincidences", or things that happen by pure chance that are so amazing that they can just leave you stunned, as though there were a higher purpose intended. I've been in tune with this idea for awhile now, and have felt more than a few synchronicities throughout my life, and especially since I was diagnosed with cancer five years ago. Some of the things that have happened while struggling to find my way through all of this has been amazing, as a number of things just fell into place when I really needed them to, with no ability to control things on my own. There are no coincidences.
In December of last year, I happened to win a Kindle Fire HD tablet in a local photography contest. I had wanted to read a number of cancer related books and memoirs for awhile, but hadn't felt like I was ready to prior. My life has been a cancer memoir in the making and an emotional roller coaster for the past few years, so I hadn't felt ready to start reading the memoirs of others. I'd tried on a few occasions, but it was just too much, too personal, and way too emotional for me. I took note, however, that I didn't win the fancy headphones, nor did I win the Bluetooth speaker that I actually wanted, but instead won the Kindle tablet. There are no coincidences. I took this as a sign that I was ready, and purchased a bunch of cancer-related books that had been on my reading list for awhile.
Life and work had been busy, so there they sat on my new Kindle for awhile, but I finally started knocking them out on our family Spring Break trip to Singapore and Taiwan, to visit family, which of course involves some incredibly long flights across the Pacific from the east coast of the United States. I read the late Paul Kalanithi's book "When Breathe Becomes Air" which was a beautifully written book about the intersection of life and death, of medicine and science, and of philosophy and religion. I was a teary mess throughout the book, but it was simply beautiful, and definitely something that I'll need to re-read to fully appreciate. Next up on the reading list was the late Wayne Dyer's "I Can See Clearly Now", much of which was about many of the synchronicities in Dr. Dyer's own life. Although not about cancer, Dyer's book helped me to understand how the simplest of things beyond our control, and even the more rotten things that might happen to you in life, can be the means and catalyst for change through which we're able to evolve or reach a higher calling in life. I've felt sychronicities like these in my own life, and especially through my cancer journey, and Dr. Dyer's perspective on the topic helped to bring an even greater sense of inner peace within me as I start to head for the door of my 30's, and leave a very long emotional struggle in the aftermath of cancer behind. I get it now. I see what he's seen, and know that I don't need to stress or worry. Little did I know, a new synchronicity was about to unfold.
Next up on my reading list was "Memoirs of a 30-Year Cancer Survivor" by Ronald Bye. Ron wrote his book in 2005, so Ron is actually a 40+ year survivor of Testicular Cancer now, and a living legend. I don't connect personally with every single cancer survivor that I run across on social media, but just felt like Ron was someone that I should know, and connected. What an inspirational man for so many of us to know, someone who had survived this disease for longer than many of us have been alive. I had previously thought about how great it would be to finally start connecting with some of these inspirational people within the cancer community in person rather than mostly just across social media, and had been thinking of ways to make that happen for 2016. As it turned out, and thanks to our new social media connection, I learned that Ron Bye just happened to be in Singapore on business at the same exact time that I was there with my family on holiday! I live in Maryland, and Ron lives in Tennessee, but we were able to meet up for drinks all the way around the world in this tiny island nation that most people couldn't even find on a map, on March 25th, 2016, our last full day in the country!!! What an astounding coincidence and example of synchronicity!
Singapore is here. Be honest, could you have found this on a map? :)
The main land area of Singapore is not even the size of the Washington, D.C. area I-495 beltway, near where I reside!
Meeting Ron Bye in Singapore, March 25th, 2016. Singapore has always been near and dear to my heart ever since I first set foot there in 2005, while also on business travel. A chance encounter with this living legend here has now endeared the country to my heart! What an amazing place, in so many ways!
Ron Bye's Story of 40 Years of Testicular Cancer Survivorship
Ron Bye's testicular cancer story is an incredible tale of survival despite the odds, and it was a great honor and privilege to get Ron's perspective in person. When Ron was diagnosed with Stage II pure embryonal carcinoma testicular cancer in 1975, he was not expected to survive, was given only a 50% chance of still being alive after 2 years, and only a 10% chance of survival after 5 years. This was still the era when testicular cancer was considered to be a death sentence for anything but Stage I cancers, as the Cisplatin drug was still a miracle in the making, and not available yet. Ron's best and only chance of beating his cancer was with the RPLND surgery, which was called a retroperitoneal lymphadenectomy back then. As is pretty well understood today, this surgery is rarely if ever used as a primary treatment for Stage II testicular cancers that have metastasized to the retroperitoneal lymph nodes, and especially not for mostly embryonal carcinoma, as this is one of the more aggressive types of testicular cancer which can more easily jump past the lymph nodes, and which greatly lowers the chances of such an invasive (and costly) surgery actually being curative. The modern era highly effective Cisplatin-based chemotherapy protocols are used for these cancers first in most cases, but back in 1975, the RPLND surgery was the only chance. Sperm banking was never discussed at the time, and fertility preserving nerve-sparing techniques had not even been developed yet, as people like Ron simply weren't expected to survive. Ron underwent the surgery, and one lymph node was found that was positive for cancer.
Because of the cancer positive node, chemotherapy was required after this, as would be in most cases today. Ron went through a full year of chemotherapy using cyclophosphamide, vincristine, and actinomycin D combination, also known as dactinomycin. Although this early protocol offered some response, complete remissions were rare, and cure rates were typically in single digit percentages. The initial Cisplatin treatment protocol of PVB (Cisplatin, Vinblastine, Bleomycin), was still a few years away, although had started clinical trials at the time. Despite how badly the deck was stacked against him, Ron beat all of the odds, is still here today, and literally became the benchmark for other doctors to learn from.
I was born in 1977, two years after Ron's cancer diagnosis (a fact that Ron wasn't all that enthusiastic about!), during which time the Cisplatin drug and PVB protocol had reached Phase III clinical trials, all of which were wildly successful. When I was diagnosed with Stage II testicular cancer in 2011, with a case presentation practically identical to Ron's, I had the benefit of all of these decades of advancement in the field of oncology and the treatment of testicular cancers. My treatment with four rounds of Cisplatin and Etoposide (the EPx4 protocol) was considered to be a sure thing with a 90-95% cure rate, and the RPLND surgery that I underwent was more of a "just to be on the safe side" type of surgery. You'd think that all of these advancements might have made my journey in dealing with cancer so much easier, but in reality I still struggled in many of the same exact ways that Ron did in the aftermath of cancer.
There Is No Easy Cancer
The fact is, there is no easy cancer. Whether your prognosis is poor or excellent, cancer still turns your life upside down, and the whole experience is terrifying even with an excellent prognosis. If you're given 10% survival odds, you're afraid for your life as Ron was. But even 90% survival odds can be no less frightening, because you're worried about being one of the 10% that will slip through the cracks, who will have an unexpected hiccup during treatments, or one who will have that unexpectedly aggressive cancer that just doesn't respond to treatments the way that most other cancers do. I've seen it happen.
Scott and Judy Joy, photo used with permission. Judy Joy passed away in late-2013, just three months after being diagnosed with multiple myeloma.
My friend, Scott Joy, is now a 13-year survivor of testicular cancer, and has been a hugely inspirational figure to many cancer fighters out there, and who has also helped to raise hundreds of thousands of dollars for LIVESTRONG over the years. Scott's wife, Judy, was diagnosed with multiple myeloma in the summer of 2013, and his family was once again facing cancer. Multiple myeloma isn't a curable cancer, but it is considered manageable for many years, or even a decade or longer. Judy's cancer was one that was unexpectedly aggressive, and unexpectedly non-responsive to treatments, and the disease quickly claimed her life just three months from her diagnosis. The Joy family was devastated, as were thousands of cancer fighters and survivors out there that Scott had inspired and encouraged over the years. Scott and Judy were high school sweethearts, and had four beautiful children together. They thought they still had many years together, but instead she was tragically taken from them in the blink of an eye.
This is the fear that every single person that has faced cancer has to live with, and has to find ways to cope with and overcome. There are no certainties with cancer, all bets are off, and there's no such thing as a guarantee. It's what makes cancer so terrifying, regardless of the prognosis. It's a silent killer that we can't see or hear, and while we have mountains of study modeling them that tries to predict how a certain cancer is likely to behave, cancer doesn't play by any rules, and we're left in a perpetual defensive state never knowing if or when we can ever relax. We want predictability and sure things. We want things to be 100%, and not 90 or even 99%, but cancer is anything but a sure thing - it's literally nature gone awry, and that's a tough thing to live with inside of you.
I found it striking just how much I related to Ron Bye's story and his struggles in the aftermath of cancer as we talked and I read through his book, despite the polar opposite prognosis we were given through different eras. Both Ron and I had moderate to extreme anxiety in the years that followed, and we both nearly had heart attacks from recurrence scares. I've written extensively about posttraumatic stress after cancer, and Ron had signs of that as well. Both of us were terrified of our bodies, and also worried for our minds, and not being strong enough to make it if our cancers were to return, which is a fear that I lived with inside for years. The oncologist's joke about testicular cancer, trying to ease the minds of patients, is that testicular cancer is the most curable cancer there is, and that a relapse of testicular cancer is the second most curable cancer, referring to the highly effective second and even third-line treatments that have been developed over the decades. Insert nervous laugh. Even Dan Duffy wrote of this in his memoir, "The Half Fund", about how excited and even giddy his doctor was when they realized he had Stage III testicular cancer. I understand the oncology perspective, and how ecstatic they are about cancers they can actually cure as there are still many that cannot be, such as multiple myeloma, which claimed the wife of my dear friend. I deeply respect and admire the oncologists that developed these life-saving drugs and treatments, but when it's your ass and life on the line, it's no less terrifying for the patient.
Similar Approaches to Life After Cancer despite Opposite Prognosis
Ron and I both found a way to focus after our cancer fights. Ron described himself in his memoir as lacking direction in his early-20's when he was diagnosed, but fully immersed himself in work afterwards, and never really let up until he wrote his memoir 30 years later! When I was diagnosed with cancer at 33, my wife and I had just started a family. I felt so cheated, because we had been working our tails off through three solid decades to get to where we were in life, only to fear that cancer was going to rob us of any enjoyment of that. I focused heavily on work as well, and had just started a new job not even a month after my RPLND surgery, but dual-focused on truly enjoying life for the first time rather than working so damned hard. After I had gotten my new job lined up while going through my second round of chemotherapy, my wife and I immediately splashed out on the brand new BMW convertible that we had always wanted, and that really set the tone for the next few years. It was time to start living our lives! If not now, when? Tomorrow can be taken from you in an instant. Enjoy life today!
I had been a petrol head my entire life, but never really had a "real" car. We love this thing, and take it just about everywhere! There's room for four! As of 2016, I'm still driving this car, and loving every minute of it. :)
Ron and I both came to accept certain things about our lives philosophically, and its nature. Ron accepted in his mind that he would once again hear the words "you have cancer" at some point in his life in the future, which provided him with the drive to focus relentlessly on work and other things in life. I developed a similar post-cancer mentality not in that I believed that I would have to face cancer again (although this was most certainly a fear), but just came to the realization of how fragile and precious life truly is, that in a moment everything can change, and how powerless we are to stop life's tragedies or misfortunes from happening to us or those we love. Whether it's a terrible accident, or a health crisis facing cancer or a disease, there are no shortages of ways in which our lives or those we love can suddenly change forever. My cancer experience burned this uncertainty about life into my mind, and taught me to enjoy what you have and those in your life each and every day. There are no guarantees for anybody, and any perceptions of that have merely been illusions. What's here today can be gone tomorrow.
Show your love to your spouse or partner in life everyday, hug your kids everyday and tell them all how much you love them. Do something fun with your family everyday. Find an external focus and things that you enjoy doing, and do them. Enjoy your friends and those that have been meaningful to you in your life often, and let them know how much you love and appreciate their presence in your life. I thought I had forever before and was in no real rush to do anything, but now I never let a day go to waste, and those that have truly meant something to me know just how much they're loved and appreciated.
One of the biggest takeaways and most inspirational lessons to be learned from Ron's story of cancer survivorship, is to never lose hope, and especially to never place too much stock in those five year survival rates! New therapies and methods of treatment are always being developed, and this means that the five year survival rates are always at least five years out of date! It was during the time that Ron was diagnosed with cancer, and fearing for his life in the years after with such a poor prognosis, that the miracle Cisplatin drug was in its wildly successful clinical trials. Cisplatin was approved by the FDA in 1978, turning the poor survival rate on its head, and testicular cancer into a modern success story. To date, this drug has saved the lives of millions of cancer fighters out there, including my own. Advancements as seen with Cisplatin are rare, and described as once per generation, but the point is that medical knowledge is continually advancing, not standing still. As Ron states in his book, ignore the statistics and just live your life!
I don't think it was merely coincidence that I just happened to meet Ron Bye by pure chance all the way around the world in Singapore. What are the odds? Knowing what I know and have come to believe in, I believe that I was meant to meet Ron for a reason. There are no coincidences. Ron has traveled extensively, but this was his first trip to Asia. Obviously, something was in play in the universe to allow this to happen, and I'm greatly appreciative for this opportunity. What a great honor it was to sit down with this living legend and chat about life and cancer over a few drinks, in such an incredible place. I'm still taking the magic of our encounter and Ron's perspective in. There's so much that I've learned here, I'm in the midst of a number of revelations, and look forward to sharing more in the future.
Thanks again Ron!
StevePake.com
You can pickup Ron's memoir on Amazon by clicking on the link.
PTSD After Cancer Part III - Managing Life After
In Part 1 of these essays, I described what posttraumatic stress felt like to experience, and in Part II, I described the various things that I did to cope with and recover from it. In this final essay, I'm sharing the things that I've done to manage my life after suffering from posttrauamtic stress after cancer.
PTSD will hollow you out inside. After these fires had raged inside of me for six solid weeks, there was nothing left of me but smoldering piles of rubble. My mind was scattered into a million pieces on the ground, and I hadn't a clue on what was supposed to go where, nor what the final picture was even supposed to look like. I was just gutted. As much as my life changed after being diagnosed with cancer, it changed just as much if not more after I started suffering from posttraumatic stress in the years after cancer.
PTSD After Cancer Part I - What It Feels Like
PTSD After Cancer Part II - Coping and Overcoming
PTSD After Cancer Part III - Managing Life After
In Part 1 of these essays, I described what posttraumatic stress felt like to experience, and in Part II, I described the various things that I did to cope with and recover from it. In this final essay, I'm sharing the things that I've done to manage my life after suffering from posttraumatic stress after cancer.
1. POSTTRAUMATIC STRESS IS NOT WHAT'S WRONG WITH YOU, IT'S WHAT'S RIGHT
If your home burned to the ground and you lost everything, and only narrowly escaped with your life, you can't tell me that the smell of smoke or the sound of a fire engine coming down the road wouldn't make you cringe, and possibly want to run out the door. This is a normal, healthy reaction to traumatic events in our lives. Human beings haven't evolved over billions of yeas to our position of dominance on our planet because we have poor instincts. We actually have extremely powerful instincts, and posttraumatic stress represents our protective instincts kicking in, trying to remove us from harm and situations that are perceived as threatening. You should never feel ashamed if something or someone that reminds you of a traumatic event, makes you feel afraid months or even years after the traumatic experience. It matters not weather it was a house fire, a plane crash, a war, or fighting cancer; when we experience things that remind us of our past traumatic experiences, it's the same protective instincts that kick in, trying to remove us from perceived harm.
PTS is not what's wrong with you, it's what's right. Act like it.
If something or someone reminds you of a traumatic experience, you're supposed to be afraid, you're supposed to want to run away, or hide, or fight back. Posttraumatic stress isn't what's wrong with you, it's what's right! It's a sign that all is well, and that your mind is working exactly as it should be!
2. POSTTRAUMATIC STRESS IS NOT "PTSD"
There's a huge problem with perception out in the world with how posttraumatic stress is perceived. Posttraumatic stress after a traumatic event, such as fighting cancer, is very normal. Such episodes might last anywhere from an hour to a few days, or maybe a week. Full blown posttraumatic stress disorder is when you have all of the symptoms of posttraumatic stress for extended periods of time, several weeks or more, and that never seem to let up even after being removed from the stimulus that had triggered the posttraumatic stress episode. This is a very serious situation that requires professional help or treatment, but because any sort of posttraumatic stress is generically only referred to at "PTSD", too many people feel like there's something wrong with them when there isn't, and might be more reluctant to seek the help and support that they need. Rest assured that feelings of posttraumatic stress after cancer are very normal to experience, and that there’s absolutely nothing wrong with you. These are our self-protective instincts coming to the surface, trying to remove ourselves from situations that have been perceived as being threatening.
3. ACCEPT WHAT YOU'RE FEELING
The extreme feelings of fear and anxiety that posttraumatic stress can cause us to experience come from our sub-conscious, and thus we have no conscious control over such feelings. We can't just tell ourselves to not be afraid. All we can control is how we consciously react to these sub-conscious feelings and instincts that come to the surface. We can beat ourselves up, and berate ourselves for being afraid when we feel like we shouldn't be, but this is denying ourselves. We're hurting inside, and beating ourselves up just makes things even worse. A far better approach is to simply accept what we're feeling, without criticism or judgment. Instead of criticizing yourself for being afraid, simply accept that you're afraid, and try to find healthy and productive outlets to channel those feelings into. Write about how you feel, or dump this energy into an exercise routine, for example.
4. STAY CLOSE TO YOUR COPING ROUTINES
As suddenly as the posttraumatic stress mechanism in our minds can be switched off, it can also switch back on again. Thus, it’s very important to stay close to whatever routines you’ve developed to help manage your posttraumatic stress. I took to running as a form of therapy to help manage mine, and I always made sure that my running shoes and clothes were prepped and ready to go so that there wouldn’t be any delays, should I suddenly need to go for a run. If I’d come home from lunch dealing with PTS issues in my mind and didn’t have my running gear ready to go, that’s 30 minutes wasted trying to track everything down with that terrible, panicking, freewheeling energy burning me up inside. It’s best to have ready-to-go “turn key” coping methods at your disposal that you don’t even have to think about, whenever the need arises. Stay close to your coping routines.
5. STAY CLOSE TO PEOPLE THAT BRING YOU COMFORT
As important as it is to stay close to whatever routines you’ve developed to help you cope with your posttraumatic stress, it’s important to stay close to the friends and people that help you to cope as well. Most people in my life genuinely cared about me, but just didn’t know quite what to do for me, or how to support me. Posttraumatic stress was just as foreign for them as it was for me, and some tended to shy away simply because they didn't want to cause any harm. There was a highly select group of people that just “got me” in some way, as though there were a very deep soulful connection in play that just engaged naturally when I needed it to. With or without having ever experienced anything that I had or not, these friends of mine have always known what to say and do, and not once have they ever run afoul of me or done anything that’s come even close to upsetting me in the years that I've now known them. These are the people that I needed to spend my time with, because they helped me feel normal and at ease, and gave me a break from this terrible hurricane in my mind. To have friends and people in my life that could help me forget all that I was in the midst of during such a terrible storm, was an unbelievably great gift and blessing to have. These select friends of mine know who they are today, and it’s a very deep and soulful love that I have for them.
6. NEVER STOP LIVING AND ENJOYING LIFE
Don’t ever let posttraumatic stress keep you down, and stop you from enjoying life. As I wrote in PTSD Part II, I pushed hard against the boundaries that posttraumatic stress was trying to keep me within, and made sure to get out with friends that I felt fully comfortable around. This is why it’s so important to have or find friends that really get you, even if you don’t understand how or why. Go with what feels right, even if you don't understand. These friends of mine helped to rescue me from the inner turmoil in my mind, and allowed me to keep busy, keep active, and keep enjoying life even during these times of great distress. The best way to survive cancer, is to LIVE!
A photo collage of our adventures in 2015, while I was still struggling to sort out inner post-cancer demons, and sources of posttraumatic stress. It didn't stop us from having the time of our lives. Get out and LIVE!!!!
7. Find little things to enjoy everyday.
When I was suffering from posttraumatic stress, I felt like an endangered species and like my life was being threatened everyday. As those of us that have experienced this have felt, posttraumatic stress can feel like you're walking around with a loaded gun pointed at your head constantly. You feel like a marked man, and the level of stress I felt from this were unlike anything I had ever experienced in life, even while fighting cancer! Weekend activities with family and friends, and vacation planning wasn't enough. I needed to find little things that I could enjoy everyday, and that gave me some sense of comfort and happiness. You have to eat everyday, so why not eat well? Treat yourself daily. I’ve become a well-known foodie to friends, and post all sorts of food pictures over social media and especially Instagram, when I had almost never done so before. I tried to pinpoint the time that I really got into food and became a foodie, only to realize that this was borne out of my posttraumaitc stress, and my desire to find things that I could enjoy in life everyday, no matter how small. A nice "last meal" everyday, because at the time, I felt like it could be.
"It's amazing how healing the power of good food and company is", says my friend Alexia Karanikas (lower right), co-survivor to her husband Nate, who also had testicular cancer. I couldn't agree more!
8. THE IMPORTANCE OF SELF-LOVE
For years, I lectured myself and beat myself up for being afraid, when logically I knew that there was no reason to be. I had a highly curable Stage II cancer. I went through a chemotherapy protocol that was a virtual guarantee of being cured, and then did the retroperitoneal lymph node dissection surgery on top of that for good measure. If there was even one stupid little sub-detectable cancer cell floating around my body after four rounds of chemotherapy, I just wanted it gone. I know what the stats are; I’ve read the medical literature. Almost no one whose had a Stage II testicular cancer that does both primary chemotherapy and the RPLND surgery ever experiences a recurrence, yet I was still so afraid and terrified. Allow yourself to be. Don't fight yourself! Love yourself by accepting what you feel, without judgement or criticism. Beating yourself up for what you feel just compounds the pain and makes things worse, and your sub-conscious will never let go of what it feels. Stop denying it. Love yourself, forgive yourself, accept your feelings, and work with them rather than against them. Be your own best friend.
No one expresses the need for self-love better than cancer survivor and author Anita Moorjani, who wrote about her incredible experience in her book, "Dying To Be Me".
9. FIND SOMETHING TO BELIEVE IN
My lack of firm spiritual beliefs ended up being another source of pain and difficulty for me in the aftermath of my cancer, and especially while dealing with posttraumatic stress. What makes the aftermath of cancer so terrifying? It’s because we fear our cancers will return, and that we’ll die. Firming up my spiritual beliefs helped to take the wind out of the sails of my fears of death, which in turn helped me to stop being afraid. We live in a society today that seemingly shuns religion and spiritual beliefs, and looks upon them with contempt. Yet, it’s my own independent spiritual beliefs that I fully developed and embraced that helped me to overcome my posttraumatic stress issues, and fears of dying of cancer. In the crazy world we live in today where mental health is at the forefront, why are we shunning and vilifying things such as religions and spiritual beliefs that can help us feel more at peace, and understanding of our place in the world? I feel that this is a huge mistake. If you’re suffering from anxiety, depression, or posttraumatic stress, but don’t have firm spiritual beliefs, reconsider why you don't, and that the lack of such beliefs might actually be contributing to the very anxiety that you're suffering from. This was the case with me.
10. TIME DOES HEAL
I've been asked, and I don’t think you can ever completely heal or cure yourself from posttraumatic stress, but it does get easier with time. Once you’ve been through a traumatic event or two in your life, and associations are made that trigger these fiercely protective self-preserving instincts, it can be difficult if not impossible to break them. That said, I have broken some associations, with extreme difficulty, but to this day I don’t think I could casually walk back to the infusion lab of my oncologist’s office to say hi to some of the wonderful nurses that I know back there, without breaking out into a nervous sweat, or my heart rate jumping through the roof. The mere thought of it sends shivers down my body, and that’s still posttraumatic stress in the background. I'd have to do something to break that association, but I can’t un-experience all of the hell that I’ve been through fighting cancer, such that the associations were never made in the first place.
As time has gone on, the posttraumatic stress reactions have become much less intense, my sub-conscious has seemingly become a bit more trusting of my conscious ability to keep myself out of danger, and plenty of positive memories made in the passing years has helped to write over the painful memories of the past. Another thing I had feared? Never really getting to live and enjoy my life. I've done that and then some in the past few years, and this has brought me a great sense of peace and comfort as well.
The best you can do is love yourself, care for yourself, forgive yourself, be your own best friend, and cope as best you possibly can. Finding the help that you need, the friends that know how to support you and make you feel right, hobbies and activities that serve as effective outlets, and that keep you present and engaged as much as possible, are all a part of the "cure" for posttraumatic stress. There's a reason why the center photo below appears on my homepage, as it represents all of the above in one photo. An enjoyable activity with my family, and with friends that just get me and that have always made me feel right.
The annual Blackberry Festival at Shenandoah National Park in 2014, with some very near and dear friends.
Final Thoughts
When I first started suffering from posttraumatic stress in my years after cancer, I scoured the Internet, but couldn’t find even a single real-life accounting and example of an actual cancer survivor experiencing posttraumatic stress. I had no idea if this was something that others had experienced or not, what it even felt like, nor how anyone might have managed to find their way through it. All I ever found were dry, clinical sounding pages that merely listed the symptoms. I never felt more alone in my life, not knowing what to do, nor if there were even anyone else out there who had experienced what I had. I think after experiencing posttrauamtic stress, that most people just don’t want to think about it again after they get through it in whatever way they manage, or don’t even know how to begin describing what they had felt inside. This leaves a great knowledge gap and void, and it's one that I wanted to fill with this writing. The world now has a first-hand accounting of a cancer survivor that suffered from post-traumatic stress, what it felt like, what it took to pull themselves through, and all that's been done to manage life in the aftermath.
Many tears and bottles of wine went into the making of these essays. It took me two years after I had started experiencing posttraumatic stress to even begin writing them at all, and over a year of writing in bits and pieces to get these series of essays together, because small bits at a time was the most I could handle. I’m currently five years out from cancer as I write this, and three years out from the point that I started suffering from posttrauamtic stress, and I finally feel completely at peace and at ease with everything. It’s my hope that these essays find their way to those that are suffering and in need of perspective, and that the sharing of my experiences helps others to find their way through this and heal, as I have.
God bless.
StevePake.com
How to Cope with the Fears of Cancer Recurrence
The passage of time without any new evidence of disease is the only way that we ever get to "cured", and that makes for a very challenging waiting game in our years after cancer. Nothing has been more terrifying to me during these years than the fears of recurrence, and every strange pain or irregularity in our bodies brings these fears to life.
The thorn in the side of every single cancer survivor out there, is that we never really know if our cancers have truly been cured or not. The best status we ever get from our doctors is "NED", no evidence of disease, but this doesn't mean that no disease is present, it simply means that none can be detected. The passage of time without any new evidence of disease is the only way that we ever get to "cured", and that makes for a very challenging waiting game in our years after cancer. Nothing has been more terrifying to me during these years than the fears of recurrence, and every strange pain or irregularity in our bodies brings these fears to life.
Cancer casts a permanent dark cloud over our heads in that because we've had cancer once, we're statistically far more likely to have it again. And because we've been through toxic chemotherapy or radiation treatments in order to cure our cancers, we're at additional risk for secondary cancers just due to that alone. Even after we're deemed "cured", it's tough to avoid worrying about our cancers coming back, or even developing a second one. These worries so overwhelmed me in my initial years after cancer that they broke me as a person, and I had to come up with a new philosophical approach to living my life.
1. Realize that You are More Than Your Body
We're all so much more than our bodies. Does it make you any less of a person because you had cancer and that it scarred you inside and out, disfigured you, caused you to gain weight, lose your hair, or have so many other body image issues? Certainly not! I learned to stop identifying with my body. Why wouldn't I when it failed me in such a terrible way, and scared the hell out of me so many times afterwards? Our bodies are merely the vehicle through which we can live and travel in this lifetime. We're so much more than what we see in the mirror.
2. Accept that You Have No Control
Especially while in the midst of recurrence scares, my mind had been grappling for control of things. It just needed to know that my cancer was gone forever, and that I was going to be okay, but we can never really know such things. We have no real control, and I had to learn to let go and free my mind from the burden of trying to "know" that I was going to be okay now, next month, next year, and forever after that. The reality is that there have never been any guarantees for good health for anyone. It was a difficult pill to swallow, accepting that I could never really know what I wanted to know, but it was one that I had to swallow.
3. Never Stop Living and Enjoying Life
What more reason or motivation does one need in our uncertainty filled years after cancer, especially while dealing with fears of recurrences, than to get out and truly live your lives? What are you waiting for? Make plans, go somewhere that you've always wanted to go, or do something that you've always wanted to do. Live and enjoy life the very best you know how, and spend time with people that bring you joy and happiness, and can add to your life experience. Never let a weekend go to waste, and always have plans for something in the works. Staying engaged with life and living today, will help to keep your mind off of this darkness in the background. The best way to survive cancer is to LIVE!
4. Have Faith
What makes the worries of cancer recurrence so frightening, is because we fear that we're going to die. It's death and dying that we're really afraid of. I'd struggled with my spiritual beliefs for years, which only made things harder. I didn't know exactly what I believed in, nor who or what we really are, and organized religions had only made things more complicated and conflicting for me. Finally firming up and going all in on an independent set of spiritual beliefs as far as who and what we really are, and where we go afterwards, helped to take the wind out of the sails of my fears of dying due to cancer. I live my life with purpose and confidence today, even with my history of cancer in the background, and take great comfort in having full faith in my spiritual beliefs.
StevePake.com
Five Years and a Day Since Cancer
I wrote my reflections on reaching 5 years since my cancer diagnosis in advance on my personal blog, "Five Years Ago Today...", so that I'd have something to share on that day, but until that day came, there was no way to know exactly how I'd feel about it. I was shocked at how I felt when I woke up that morning as a newly minted 5 year survivor of cancer, because honestly, it felt like I had just woken up from a terrible dream, and it was wonderful.
I wrote my reflections on reaching 5 years since my cancer diagnosis in advance on my personal blog, "Five Years Ago Today...", so that I'd have something to share on that day, but until that day came, there was no way to know exactly how I'd feel about it. I was shocked at how I felt when I woke up that morning as a newly minted 5 year survivor of cancer, because honestly, it felt like I had just woken up from a terrible dream, and it was wonderful.
Because Mediports are so damned sexy! I got my Mediport placed just days before starting chemotherapy on March 14th, 2011.
We all seem to have these crazy dreams once in awhile where we feel threatened in some way, we're running for our lives, or we're in the midst of some terrible alternate reality of tremendous hardship that we're struggling through. They can be so vividly detailed that we can't help but think they're really happening, and when we wake up, perhaps with a scream or in a cold sweat, we quickly check ourselves and our surroundings. As we come to our senses and the haze of sleep wears off, we realize that all is well, and that it really was just a dream. Not for me. Cancer was no dream, because everywhere I look, there are signs that this crazy cancer adventure of mine was real, and no dream at all.
I wake up in the morning and I can't feel my left foot, because of extensive permanent nerve damage that my body suffered while being ravaged by chemotherapy. I can never really feel my left foot much at all. There are times I almost could have forgotten that I ever had cancer, but this persistent numbness serves as the constant reminder. I've gotten used to it, but I can't ever forget because of this. I check myself in the mirror, and there are impressive looking scars all over my body from numerous surgeries. If I really need to know, I can check for my right testicle, the one that's no longer there because of testicular cancer. It doesn't get much more real than missing body parts. Despite the overwhelming physical evidence, my mind still wanted to believe that this was all a crazy dream that I had just woken up from. And you know what? I let it.
As a cancer survivor, it's tough not just to find happiness and any peace of mind at all, but being able to hold onto it. My family and I have had the most amazing times and adventures together over the past few years, and I’ve gained some truly wonderful friends along the way. Life itself has been amazing, but in the background, there’s always been this darkness, quietly lurking, and threatening to take everything away again. It’s tough to avoid being dragged down. How could you not be, when every other month your entire life is put on the line, pending a clean set of scans? It's been tough to remain happy. Who would ever want to have to deal with this? And then there’s been the post-traumatic stress, which has been another world of misery all by itself. I've had to learn how my mind works both consciously and sub-consciously, in order to be able to effectively care for myself. There are so many inner mechanisms, and tools of the trade that I've learned in order to keep my mind in a good place. It's required constant attention, struggle, and evolution, which has been far from a painless process.
As I wrote on my personal blog...
"I'm not the same person that I was five years ago. I’ve crashed and burned to the ground hard three times in these past five years, not just from the shock of a cancer diagnosis as a young adult, but from all of the struggles to evolve and grow into life after cancer. That’s three times since being diagnosed with cancer, that I've felt completely shattered and broken inside, and have had to give up so much of what I'd believed about life, and start over. One doesn't simply do an about face on decades of programming and expectations about life in an instant. It takes time measured in years to heal and evolve, to slowly let go of the old, and to finally grow into our post-cancer realities."
Suddenly, I woke up the morning that I became a five year survivor of cancer, and something just clicked in my mind sub-consciously. Cancer wasn't real anymore. It was just a bad dream that was over now, and no longer registered in my mind as a threat. I no longer felt any need to worry or keep watching over my shoulder. I didn't get sick to my stomach, have an anxiety or post-traumatic stress attack meltdown, nor did I need to go on an emergency 5K run just to bleed any nasty feelings off. It just felt like another day. And today, as I'm finishing this blog, it's March 14th, which was my five year anniversary since starting chemotherapy. Days like these had really given me a run for my money in the past, and forced me to be on my game as far as self-care goes. But today, now, at five years out, it's become just another day.
I'm going to take all of the positive things that I've gained from this experience, the new perspective and appreciation that I have for life and so many things, all of the wonderful memories made and friendships gained, and take them along with me through life. Everything else, all of the rotten parts, the constant fear, the worry and anxiety, the recurrence scares, the physical struggles, the periods of depression and post-traumatic stress, and a few toxic people who just made things worse, are going to be left in my mind as nothing but distant and fading memories of this bizarre nightmare that's all in the past now.
It's taken me five years, but I've finally woken up from my cancer survivorship nightmare. It's tough to put into words just how good this feels. It's bittersweet to finally be saying goodbye, and leaving all of this in the past, just as you would a bad dream. That's how my sub-conscious mind sees it now, and God bless it, I'm perfectly willing to go along.
StevePake.com
You Either Get Bitter, Or You Get Better
I can't change the fact that I had cancer. I can't change the fact that it wrecked me in so many ways physically, mentally, and spiritually. But I can control how I respond to being wrecked, and keep getting back up again. :)
I can't change the fact that I had cancer. I can't change the fact that it wrecked me in so many ways physically, mentally, and spiritually. But I can control how I respond to being wrecked, and keep getting back up again. :) You can't control what life might throw at you, all you can control is how you respond and your attitude. Keep getting up, keep trying new things, and keep going in new directions, until you find a way to overcome and thrive, no matter how extraordinary. "Your attitude is everything, and is a self-fulfilling prophecy. No matter what it is that you’re facing, if you believe in yourself with all of your heart and soul and believe that you’ll find a way to cope, to heal, or to overcome, you’ll find that way no matter how difficult. If you don’t believe in yourself, not only will you not find what you need, but you’ll prolong your own suffering and pain. Never give up, never stop believing in yourself, and keep your heart and your mind open. Surround yourself with positive and uplifting people that believe in you too, who can help to carry you during the times you might stumble."
StevePake.com